bluemoons Posted April 28, 2016 Report Share Posted April 28, 2016 Hi Everyone, I am not one to post but I have been trying to find doctors in Nebraska that can help with my POTS. my problem is the Doctor did not read the TTT right. my HR starts at 79 BP 106/63. first min is HR 104 BP 92/67 at 10 min HR 125, BP 94/73. As best as I can tell this is a positive test for POTS which my doctor from 3 years ago thought I had. but everyone keeps saying that my TTT is fine, so I am not getting any help and I can not get into any Doctors. I have multiple other problems Dizzy, Hurt all over, can't stay on my feet for more that about 5 min or my HR go's up and I have a hard time breathing. Any help would be great. I have taken the test into the Doctor and a print out of POTS. they just look at me. Thank for listening. Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 29, 2016 Report Share Posted April 29, 2016 There are docs on our physician list from NE and CO. You might want to check them out to see if you've contacted any of them. http://dinet.org/index.php/physician-list?view=physicians Quote Link to comment Share on other sites More sharing options...
LisaP63 Posted April 29, 2016 Report Share Posted April 29, 2016 Sounds like you already have defining literature, but the main Dinet site also has footnotes and links to the medical literature if you need more info. From the DINET "POTS Overview" section: Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising." I hope you find the right medical support to help you with a diagnose and to manage your care! Quote Link to comment Share on other sites More sharing options...
bluemoons Posted April 29, 2016 Author Report Share Posted April 29, 2016 thank you so much for the info my concern was thinking I was wrong on having POTS. I have had a Doctor tell me I have it but with being told that the TTT was neg I am having a hard time getting into a specialist, they tend to read the result not the test its self. I tried getting into one about 2 years ago I waited 8 mo for the appointment and a month before they called and said he could not keep my appointment I would need to see someone else or wait another 8 months. I should have waited the extra 8 months. ended up with someone that did not know anything about POTS, so I hate to try this first one again. I am just so frustrated. but reading notes on here I see I am not alone, and I see that there is help out there, thank you all for sharing. I will keep at it. Quote Link to comment Share on other sites More sharing options...
Nebraska26 Posted August 11, 2023 Report Share Posted August 11, 2023 Did you ever find your solution? Did you find a doctor in NE? I’m looking for one too that would listen to me Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.